We have a caretaker for during the day when we go to work, but she won't stay alone, if we need to go to store, etc. We can never go out spontaneously - even to supermarket, it's getting worse. I am beginning to feel like a prisoner. How can I deal with this? I am having anxiety and want to try to keep her with us as long as we can. We are doing all we can to help her - it is exhausting as she cannot do much on her own without assistance. Any advice?
So, as caregivers, we really do give up our option to go out spontaneously. I sometimes asked a neighbor to pick up a few items for me at the store, since I could not leave my husband alone. It was very helpful to have in-home help, and even a volunteer, but those were always scheduled in advance. I couldn't suddenly realize I was missing an ingredient for supper, or that I needed something from the drugstore. And I certainly couldn't accept a spontaneous invitation to meet a friend for coffee.
So I understand your anxiety. And I know it is exhausting at this stage of the dementia. I can offer empathy, but I am not sure about advice.
Would it help, do you think, if you scheduled a caretaker or companion for some hours outside of your working day? I know that is not "spontaneous" but it might relieve some of the stress.
You talk about "us" and "we" -- do you have a partner or spouse? Could each of you have some "me" time each week while the other stays with Mom? You go to a book club on Saturday mornings, and he plays poker with the guys Friday nights?
Do you arrange respite care so you and your partner can get away for short vacations?
At this point it would seem a shame to have to move Mom to a facility if you can possibly work out ways to deal with your anxiety. She is not likely to live many more years. But if it is necessary for your own sanity and health, do what you have to do without feeling guilty. You have done an amazing thing for her all these years. You deserve to feel proud.
But, you have to have a life. You have to get out, whether temporarily or permanently. I wish you good luck.
Unfortunately as your mom begins to need more assistance you might have to adapt and change your schedule to suit her needs. Is this fair? No. But it might be necessary. Enlisting more help (by having caregivers) in caring for her might be your only solution. You shouldn't have to feel like a prisoner and we all have things we need to do, things we need to take care of, errands that have to be run. If your mom is not safe at home alone you're going to need some help. My dad, who lived with me, didn't have the money to hire caregivers so when I had to leave I dragged him along with me and he sat in the car while I ran through the grocery store like a madwoman. It took a lot of planning and a lot of work to get him out of the house. I had to safeguard my care against incontinence and repeatedly tell my dad that I would be right back. It was a race to see if I could get my stuff done before he got bored enough to try to venture out of the car on his own. It was a mess.
If your mom can afford caregivers there's your solution.